Category Archives: Other agencies

Provision of useful services.

Aniridia Europe board meeting and networking event

After the establishment of Aniridia Europe its board members met in Paris on 19 and 20 November 2011. It was a chance to meet face to face and also for new members from Germany and Bulgaria to meet us all for the first … Continue reading

Rate this:

Posted in ANUK news, Other agencies, Research | Tagged , | Leave a comment

Prepare for Rare Disease Day: Wednesday 29 February 2012

Rare but strong together A rare medical condition affects less than 1 in 2000 people. Aniridia affects about 1 in 100,000 people. Even fewer have WAGR/11p deletion syndrome making it ultra-rare. But collectively people who have rare conditions are not … Continue reading

Rate this:

Posted in Campaigns, Fundraising, Other agencies | Tagged , , | 1 Comment

Fact check on Daily Mail piece about teenager with WAGR/11p deletion syndrome

A recent Daily Mail article aroused our interest. The piece features Gemma who has WAGR, also known as 11p deletion syndrome after its genetic cause. It includes aniridia among its possible symptoms. We were glad to see a national newspaper … Continue reading

Rate this:

Posted in Medical staff talking, Other agencies | Tagged , , , , | Leave a comment

Seminar about unlicensed treatments such as melatonin

Following our recent posts about melatonin we have news of a upcoming event about unlicensed and off-label treatments – which melatonin is, Patients Involved in NICE (PIN) in collaboration with RNIB, will be holding a seminar looking at the impact using unlicensed treatment has … Continue reading

Rate this:

Posted in Medical staff talking, Other agencies | Leave a comment

Protected: Mobility session report from Conference 2011

There is no excerpt because this is a protected post.

Rate this:

Posted in Education professionals sharing, Other agencies | Tagged ,